My second child, a son, was born with an aorta that was way to narrow and multiple large holes in his heart. He went into heart failure a few hours after he was born.
The doctors told us he wouldn't make it.
He had his first heart operation when he was 3 days old to repair the aorta and put in a temporary band to compensate for the largest of the holes in his heart.
The band didn't work - it was supposed to last for a couple of years until he was stronger.
He really struggled for each breath but after 3 months of intensive care, he had finally gained sufficient weight for his cardiologist to suggest open heart surgery.
The surgery was done, and 10 days later he came home for the first time.
He reminds us every day that miracles do happen. We treasure every moment we spend with him. He turned 2 today and is fighting fit.
What makes this story more remarkable is that when I was pregnant, a scan showed that the left side of his heart hadn't grown properly. The doctors said he would die unless he received a heart transplant immediately after he was born.
Subsequent scans in utero showed the left side of his heart had been healed and was the size of a normal baby heart. (We were very relieved, and the experts didn't suspect any other problems at that stage... they were only discovered after birth once the circulation system got up and running).
I lived an hour's drive away from the hospital he was in, and had a 20mo daughter at home. I drove down to the hospital every day to see him, which was difficult, especially on his tough days.
But I'm just so grateful to have the chance to get to know this little boy. He's beautiful. We named him "Zeke", a name we picked out before he was born and before we knew he would battle for his life. Zeke means "in the strength of God."
Congenital heart failure
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